Chiari Online Support Group

Botox for Migraines


#1

Hello!

I am just curious if anyone has tried Botox injections for Migraines? I have tried lots of different drugs and haven't had much relief. I also seem to have lots of side effects from all the meds we have tried. My neurologist has suggest Botox injections but I am a bit concerned with having needles stuck into my head! I am just wondering if anyone has any experience with this, good or bad, it would be really helpful. Thanks!

Katherine Collen


#2

I did Botox three times. I found that it did not help at all. It is an incredibly strange sensation too. It feels like you are wearing a helmet at all times. Other people I know have had success but for me it was utterly pointless. I regret doing it at all.


#3

My experience with botox is that if the headaches are truly migraine, botox is helpful. When my doctors tried botox for me for chiari and IH headaches, it was not helpful, but once those issues were under control (as much as possible) and my migraines needed to be addressed, botox has been very helpful. I have had it every 3 months for the past year and a half. It is a strange sensation, and it is a lot of needles that do hurt…but I have had people who have been very good about avoiding my sensitive areas (surgery sites and shunt) and the benefits are usually noticed within a week or so for me. Good luck!


#4

Botox is a waste of time for a true chiari headache. Google DIAMOX for Chiari find scientific articles proving this medication is a safe successful treatment and bring it to your neuro. If he says no keep searching until someone agrees to put you on it. I know the Chiari specialists here on long island are aware of this treatment, i don’t know about other locations. It has some side effects that usually settle after some time of being on it, but when the exploding back of the head feeling goes away it’s totally worth it. So far I’m 7 months migraine free on 750 mg of Diamox quick release, go for the extended release it has less side effects and lower chance of a rebound headache.


#5

Diamox is no longer manufactured in the USA. Once used prtty extensivley, the use srtaed to fall off considerably about ten years ago. When it is used, its rarely long term because of side effects and uts multiple interactionns. Yes it will reduce intercranial pressure if that is the cause of your headaches, however it comes at a very high cost as it does so as a super diuretic which is not the purpose of the medication. Its not that docs don't know about it, its just that they don't feel comfortable using it long term.


#6

I am happy I found this post because I am at the point of figuring migraines and possible ways of treatment (my insurance already approved botox injections myself). I guess when we all go to neurologists with our headaches, they say, oh, that's not symptom of Chiari, that's migraine. And when they approach it as causal migraine (by casual I mean migraine in healthy people without Chiari, triggered say by food triggers...not by compromised CSF flow) treatment also don't bring expected results. My take on it is that some of our headaches are migraines some are not. And our migraines are triggered my malformation so preventative treatments may be not as effective as with regular folks. Did you ever tried Sumatriptan? This medication is specifically designed to work to stop migraine attacks. It would not help with Chiari headache. My story is Sumatriptan helps with some headaches, Topiramate (designed for people with seizures and used to prevent migraines) doesn't make things that much better. Or may be it does but I still have Chiari headaches on top of migraines so things might only get good as far with migraine medication. There will be relief but not MUCH relief. Will botox make it better for me? I don't think so at this point. Ok, let's imagine it will eliminate every single migraine but I will still have chiari headaches neurologists might not believe in but I am well aware of. My neurosurgeon is also aware of those as well but his only solution is surgery with 60% chance of improvement. That's where I am at right now. If I did not have Chiari, sure, I would go for Botox (but I have a feeling if I did not have Chiari I would not have migraines). As of now, it sounds like another possible frustration with possible side effects (and needles:). But I am still on the stage of the migraines " exploration" they hit me hard only a year ago (25- 30 migraines a months), and I started treatment only in September. May be I will try Botox one day but it does not make much sense at this point.


#7



Erin Codd said:

My experience with botox is that if the headaches are truly migraine, botox is helpful. When my doctors tried botox for me for chiari and IH headaches, it was not helpful, but once those issues were under control (as much as possible) and my migraines needed to be addressed, botox has been very helpful. I have had it every 3 months for the past year and a half. It is a strange sensation, and it is a lot of needles that do hurt...but I have had people who have been very good about avoiding my sensitive areas (surgery sites and shunt) and the benefits are usually noticed within a week or so for me. Good luck!

#8



Ada said: Completely agree with you about drawing line between migraine headaches and Chiari headaches and addressing them separately. Do you mind sharing how did you manage to put under control issues of Chiari and IH headaches? It would be much appreciated. Thank you!



Erin Codd said:

My experience with botox is that if the headaches are truly migraine, botox is helpful. When my doctors tried botox for me for chiari and IH headaches, it was not helpful, but once those issues were under control (as much as possible) and my migraines needed to be addressed, botox has been very helpful. I have had it every 3 months for the past year and a half. It is a strange sensation, and it is a lot of needles that do hurt...but I have had people who have been very good about avoiding my sensitive areas (surgery sites and shunt) and the benefits are usually noticed within a week or so for me. Good luck!

#9



Ada said: Completely agree with you about drawing line between migraine headaches and Chiari headaches and addressing them separately. Do you mind sharing how did you manage to put under control issues of Chiari and IH headaches? It would be much appreciated. Thank you!



Erin Codd said:

My experience with botox is that if the headaches are truly migraine, botox is helpful. When my doctors tried botox for me for chiari and IH headaches, it was not helpful, but once those issues were under control (as much as possible) and my migraines needed to be addressed, botox has been very helpful. I have had it every 3 months for the past year and a half. It is a strange sensation, and it is a lot of needles that do hurt...but I have had people who have been very good about avoiding my sensitive areas (surgery sites and shunt) and the benefits are usually noticed within a week or so for me. Good luck!

#10

Lets muddy the waters and play with numbers........ Surgery is 70% successful in IMPROVING symptoms not eliminating but simply making them betterE estimates of eliminating symptoms vary on both sides of 50%. People opt for surgery. needless to say, surgery is a big deal and not a lot of guarantees. Its really pretty much a gamble. Not saying whether or not its worth it because it varies by person.

But here's my question for someone facing that decision. How many headaches a month do you have? If you had a non surgical solution that eliminated 10% would that be sufficient to reconsider surgery 20%, 30% more? remembers not only are there no guarantees with the surgery 1 in 10 having it GET WORSE. Why would you NOT try something that could help without breaking open your head? What if you were having migraine caused by nerve damage and not "chiari headaches?"


#11

I have already had surgery so that won't factor in to the decision of whether or not to have Botox. However, my thoughts on surgery are really similar, how bad is your quality of life. Mine was pretty bad before the surgery, some of my symptoms have improved and I can at least work and live a relatively normal life. Surgery was beneficial for me but it did not "cure" me it merely improved my symptoms and alleviated some of the worst ones. I appreciate that you referenced the difference between true Migraines and what might be a "chiari" headache. I have long thought my headaches don't completely fit a migraine profile. I have tried so many meds that I can not list them all. I have had success with Neurontion and Inderal, Inderal worked well for what my neurologist diagnosed as migraine associated veritgo. I tend to not have much success with most meds and also seem to end up with ALL the side effects so I think at this point my Dr is pushing Botox as the next option. If I'm honest I may be content just to live with the headaches and keep up with the neurontin and physical therapy stretches. But I do realize that may not be enough. I had steroid injections into my neck in the past and it was a terrible experience and really all I can think of when I think of more needles approaching my head. Also, I am concerned about the cost as I have really terrible insurance. I appreciate the feedback as I try to make my decision.


#12

Thank you for response. Personally, I am not considering surgery because of headaches either. I did cine MRI and if my CSF is blocked then it is a different story. Should everyone try botox before deciding on surgery if headaches are only issue and CSF flow is fine? Absolutely.

My headaches started at 21 (only occipital headaches) which I believe to be purely Chiari headaches, tough ones, 3-4 a week, lots of pressure from the back of the head with nausea, dizziness, urge to vomit. About a year ago (14 years into Chiari headaches) I started having migraines (side of the head and all over) headaches (daily). I described treatment on those above. Migraines are little or less are under control by now. Chiari runs its course but I get more nausea, weakness and constantly tired. I'm having issues with left eye. Lost 10 lbs last year and can't gain it back because of all the nausea. Husband says I am anorexic, what a looney, lol. Nausea is worse than pregnancy morning sickness. When I am on my feet I feel sick about 20 minutes into walking (even if feel ok before), this is being very physically fit. Very often I feel lethargic out blue, any time of the day as if I just ate horse dose of sleep medication. Sucks.

Things like that might push me into surgery...not pain and headaches. I have a pretty high pain tolerance.

TJ1 said:

Lets muddy the waters and play with numbers........ Surgery is 70% successful in IMPROVING symptoms not eliminating but simply making them betterE estimates of eliminating symptoms vary on both sides of 50%. People opt for surgery. needless to say, surgery is a big deal and not a lot of guarantees. Its really pretty much a gamble. Not saying whether or not its worth it because it varies by person.

But here's my question for someone facing that decision. How many headaches a month do you have? If you had a non surgical solution that eliminated 10% would that be sufficient to reconsider surgery 20%, 30% more? remembers not only are there no guarantees with the surgery 1 in 10 having it GET WORSE. Why would you NOT try something that could help without breaking open your head? What if you were having migraine caused by nerve damage and not "chiari headaches?"


#13

Oh, you did have a surgery and all already. Hm.I could say try botox just to see if it works wonders but you mention terrible insurance and that sounds like another headache (tension one:) so I see your concerns. Some people with migraines benefit from Butterbur extract (herbal supplement). Again some do, some don't. Also, you got to take it for 2 months before it will start working. Anyway, my big name neurologist from Stroke center said Butterbur extract is OK. I also noticed that neurologists are pushy about botox...makes me wonder is it because it is really that good for us or ...cost effective procedure for them:). Most medications we take...we know side effects but botox is still relatively new procedure..do we know side effects? every 3 months... around 30 injections ...that's a lot of botox. I see on occasion nurse could miss a muscle and then you get a painful twitch in a neck for weeks. Also my Dr mentioned droopy eyelids and forehead skin...which could make us look 15 years older but happens very rare. I am sorry for all these thoughts...but these may be things you want to put into consideration. Your migraines might get better on its own with time. I am a believer that after surgery your brain might take time to adjust to new (correct shape) and put things on right track. Of course, I could be wrong about it. Anyway, it is great that surgery made things better for you.

All the best,


kwiatkat said:

I have already had surgery so that won't factor in to the decision of whether or not to have Botox. However, my thoughts on surgery are really similar, how bad is your quality of life. Mine was pretty bad before the surgery, some of my symptoms have improved and I can at least work and live a relatively normal life. Surgery was beneficial for me but it did not "cure" me it merely improved my symptoms and alleviated some of the worst ones. I appreciate that you referenced the difference between true Migraines and what might be a "chiari" headache. I have long thought my headaches don't completely fit a migraine profile. I have tried so many meds that I can not list them all. I have had success with Neurontion and Inderal, Inderal worked well for what my neurologist diagnosed as migraine associated veritgo. I tend to not have much success with most meds and also seem to end up with ALL the side effects so I think at this point my Dr is pushing Botox as the next option. If I'm honest I may be content just to live with the headaches and keep up with the neurontin and physical therapy stretches. But I do realize that may not be enough. I had steroid injections into my neck in the past and it was a terrible experience and really all I can think of when I think of more needles approaching my head. Also, I am concerned about the cost as I have really terrible insurance. I appreciate the feedback as I try to make my decision.


#14

I have heard good things about Butterbur, unfortunately, I am allergic to ragweed pollen and I have read that you should not take butterbur if you have htat allergy. I have used Olive Root extract and had good success with that. Out of curiosity has anyone tried Effexor for migraines? Thanks for the feedback!


#15

I just wanted to follow up on this discussion with my new find that works for my migraines...at least for ones brought up by weather changes. If you are sensitive to weather changes may be it will also works for you. I am really excited about it and still can't believe it works. I mentioned Butterbur before but I also was making research and did stock up on Feverfew extract. Its usage came to us from England and God only knows.... I mean it is even painful to think about all the rain and fog people have to handle there:). I read a lot of reviews on it, medical and just feedback of people who tried it (amazon shoppers...they do write rather long reviews). It does have side effects with some people (skin irritation etc), and works for some and doesn't for others. In Canada manufactures are allowed to label Feverfew supplements as having qualities of migraines prevention. But it is more than prevention. From amazon reviews I learned that it helps also on migraine days (or taken shortly before weather change). So, I had my feverfew sitting on a shelf. But last couple weeks were rough, I used up limits on Sumatriptan (it is recommended not treat more than one headache a week, one....lol, really...that's nothing), clouds in a sky, migraine is rolling on (like a snowball) and my daughter has a concert coming (imagine listening to 60 kids singing when you have a migraine). So, I took 3 capsules of Feverfew and shortly thereafter found myself nausea and headache free. I could not believe it. It keeps on raining and weather is bad all week here and I keep on taking Feverfew and feel OK. I do feel even hyper mentally, like back in a old good law school days...

Some medical review say that some brands just don't have Feverfew in them, so I will mention one I use. I am taking Swanson Feverfew Extract (60 capsules, 500 mg), min 0.7% parthenolides. I paid pennies for it on Swanson web. Yes, it is not going to take care of all my problems...but hey at least I will not be scared of weather changes. I don't see any side effects yet. I don't know if I will be taking it daily or only occasionally, I will do more research. I am still blown away some herb worked on my MONSTROUS headaches at the level of Sumatriptan.

Interestingly Feverfew is also believed to fight cancer cells and help with other medical issues. Quite a plant!


#16

Thank you for relating your experience ADA. I just want to caution our members to NOT take any supplements without first checking with your doctors. With feverfew especially it is important as it can not be taken with any NSAIDs because of the significant increase in bleeding risks, and additional GI issue. It also should generally not be taken by post operative patients for the same reasons ESPECIALLY if there was any ocular involvement or brain stem. These areas heal very slowly and can have blood oozing with this type of medication. It also can not be used while pregnant or nursing.


#17

I've had 3 rounds of Botox now (get them every 12 weeks) They seem to help me with my migraines (what my neuro says are migraines, The sharp nonstop stabbing pains on my brain) They do hurt, but not nearly as painful as the nerve blocks I was getting to help my head pains. If you can afford it, i would say at least give it a try. Make sure talk to your about the cost before you get them! I would hate that it could be something that could help and you not try it. I get 31 shots and its over in 5 minutes or less. The pain is honestly not that bad if that is whats holding you back, if you could handle the steroid injections then this will be a breeze.


#18

Thanks for the additional responses. I use Olive Root for my migraines and it works well. It was suggested by my Doctor actually. It helps mainly with migraines that seem to be associated with weather changes or that give me dizziness. I am still contemplating the Botox but currently I am taking Neurontin and the Olive root when needed and doing okay. But I appreciate the knowledge and feedback because I think this might be a good option for me in the future.


#19

Exactly, since this herb has strong medical qualities as any medication it will have qualities that we want and qualities that we don't need/want. Therefore, checking with Dr. and researching side effects and effect on others is a must. Sometimes even if Dr clears you you still want to make more research before you ultimately decide if it is for you. Sometimes I have 2nd thoughts looking at Sumatriptan and thinking about medical theory that Sumatriptan can cause stroke if somebody suffers from basilar migraine. Like my neurologist cared to worry about it or ever worn me. Or he ever told me about side effects of topiramate...it is absolutely not recommended to get pregnant while on this medication because of high risk of birth defects like cleft lip. I read fine print on a prescription package in a car while waiting on somebody (7 months into taking this medication). So, sure, Dr's advice, research and your own good judgement.

TJ1 said:

Thank you for relating your experience ADA. I just want to caution our members to NOT take any supplements without first checking with your doctors. With feverfew especially it is important as it can not be taken with any NSAIDs because of the significant increase in bleeding risks, and additional GI issue. It also should generally not be taken by post operative patients for the same reasons ESPECIALLY if there was any ocular involvement or brain stem. These areas heal very slowly and can have blood oozing with this type of medication. It also can not be used while pregnant or nursing.


#20


I want to try this Olive Root oil too. I hope it is not too hard to find. Please, let us know what is your routine of taking it.
kwiatkat said:

Thanks for the additional responses. I use Olive Root for my migraines and it works well. It was suggested by my Doctor actually. It helps mainly with migraines that seem to be associated with weather changes or that give me dizziness. I am still contemplating the Botox but currently I am taking Neurontin and the Olive root when needed and doing okay. But I appreciate the knowledge and feedback because I think this might be a good option for me in the future.